Difference not deficit
There is often an assumption that children and young people on the autism spectrum need to behave and live like those without autism. Many adults on the autism spectrum take exception to this assumption and the fact that much of the literature on autism uses medical terms such as deficit, disorder, and intervention. They argue that such terms are both inaccurate and stigmatising and based on an incorrect notion of what humanity and normalcy entail.
They argue that such notions can further disable people on the autism spectrum, and if internalised can lead to crises in self-identity, esteem and worth. On the other hand, there are others that argue that they are severely impaired and want to retain the term disorder to explain their experience. In recognition of this debate, much of the literature now just refers to autism or autism spectrum and not autism spectrum disorder or condition. If their needs are recognised and appropriate support is given, a significant number of young people on the autism spectrum will experience relatively few difficulties in their school lives and into adulthood.
The term autism spectrum was created by Lorna Wing in 1996 who suggested that it is simpler to state that all individuals affected in the four areas are on the autism spectrum, rather than trying to categorise them under other specific groups. Although different subgroups have been identified (e.g. Asperger syndrome, high functioning autism, ‘classic’ autism, atypical autism, semantic pragmatic syndrome), it is current thinking that such distinctions are not easily made, and these have been merged into one category of autism spectrum in the revised diagnostic classification system DSM V (2013).
How many children and young people on the autism spectrum are there?
It is estimated that approximately 1 in 100 people are on the autism spectrum. Autism is hard to detect in some young people, particularly in girls, so there may be young people in your setting who are not yet diagnosed. Autism commonly co-occurs with other conditions, including learning difficulties, epilepsy, sensory impairments or problems with mental health. More men and boys than women and girls have a diagnosis of autism, and boys tend to be diagnosed earlier. However, identifying and addressing the educational needs of a young person does not depend on having a diagnosis, whether that is autism, a literacy problem, or a social and communication difficulty, for example. Staff should not focus all their efforts on ‘getting a formal diagnosis’ as they can address the needs of the child or young person without this, by finding out with the individual, exactly what aspects of their learning programme are difficult and the type of support the child or young person would like and benefit from.
How many children and young people on the autism spectrum have exceptional skills or talents?
A significant number of children and young people on the autism spectrum have good knowledge and skills in a specific area, relative to their skills in other areas. They often have a much more uneven profile of skills and difficulties than others, so it is important that staff do not assume that because individuals have average or above average skills or attainments in some areas, this does not mean they have no problems in educational, social or work settings.
Which conditions often co-occur together on the autism spectrum?
Autism commonly co-occurs with other conditions, including learning difficulties, epilepsy, sensory impairments or problems with mental health. It is estimated that about 44-52% of people on the autism spectrum may have a learning disability (National Autistic Society 2015). Commonly associated problems on the autism spectrum are sleep disturbance, limited diet and/or erratic eating and drinking times/constipation and gut problems. About a third of individuals on the autism spectrum also have epilepsy which may be hard to detect. Many children and young people on the autism spectrum also experience high levels of anxiety due to their difficulties in interpreting the world they live in.
All of these additional difficulties can have an adverse effect on an individual’s ability to focus on tasks and it is vital that good information is shared between all those who are involved with the child or young person, so that they recognise the impact and can provide appropriate support.
Autism in a social context
Reports from adults and children on the autism spectrum often state that it is not their autism that poses them difficulties as such, but the expectations and responses they have from other people. In particular, the expectation to act, respond and learn in the same way that more typically developing peers do.
When working with children and young people on the autism spectrum, it is imperative to understand that such individuals have a differing way of processing information and thus differing understandings and social expectations to their more typically developing peers. This can create great difficulties with regard to understanding the communications and intentions of others, as well as a perceived lack of understanding from others of their own intentions.
This disruption in mutual understanding coupled with potential sensory sensitivities can make educational settings particularly challenging environments for children and young people on the autism spectrum. It is therefore vital that staff who work with them enhance their understanding of these differences and make adjustments to their own style of interaction and their expectations and modify how they interact and deliver the curriculum to these children and young people.